Reflecting on the Past, Present, and Future Impact of National Bioethics Advisory Bodies: International Capacity Building Initiatives E. Gefenas, MD, PhD Intergovernmental Bioethics Committee of UNESCO Vilnius University Lithuanian Bioethics Committee August 31, 2016 Philadelphia 1
Structure of the presentation I. UNESCO and international capacity building of national ethics committees (NECs) II. Two levels of capacity building Establishing/training of new NECs ABC project Facilitating the activities of existing NECs: General IBC/IGBC/COMEST activities Other initiatives Global Summit III. Challenges to NECs August 31, 2016 Philadelphia 2
International bodies for capacity building of NECs European initiatives NEC Forum sponsored by the European Commission, which meets on a yearly basis 28 MS of the EU European Conference of National Ethics Committees (COMETH) sponsored by the Council of Europe UNESCO is involved in: Global Summit of National Bioethics Advisory Bodies, meeting on a biannual basis supported by a secretariat at the World Health Organisation Assisting Bioethics Committees (ABC) Project August 31, 2016 Philadelphia 3
UNESCO Universal Declaration on Bioethics and Human Rights, Article 19 Independent, multidisciplinary and pluralist ethics committees should be established, promoted and supported at the appropriate level in order to: Assess the relevant ethical, legal, scientific and social issues related to research projects involving human beings; Provide advice on ethical problems in clinical settings; Assess scientific and technological developments, formulate recommendations and contribute to the preparation of guidelines on issues within the scope of this Declaration; Foster debate, education and public awareness of, and engagement in bioethics. August 31, 2016 Philadelphia 4
UNESCO Assisting Bioethics Committees (ABC) Project Directly follows from the Universal Declaration on Bioethics and Human Rights In the majority of member states NECs do not exist Three phases of the ABC project : 1. Exploration and assessment of the existing bioethics infrastructure in Member States; 2. Technical support for the establishment of the national bioethics committee; 3. Technical support for long-term sustainability: a. Technical capacity-building trainings (3 trainings in 3 years); b. Partnerships, internships and networking; c. Provision of practical information. August 31, 2016 Philadelphia 5
Committees established in the following Member States According to http://unesdoc.unesco.org/images/0015/001528/152825e.pdf Colombia (2009), Côte d'ivoire (2002), El Salvador (2009), Gabon (2008), Ghana (2009), Guinea (2007), Jamaica (2009), Kenya (2008), Madagascar (2007), Mali (2009), Oman (2009), Togo (2007) However, no further information about the activities is provided August 31, 2016 Philadelphia 6
Intergovernmental Bioethics Committee (IGBC) Created in 1998, under Article 11 of the Statutes of the International Bioethics Committee (IBC). Comprised of 36 Member States whose representatives meet at least once every two years to examine the advice and recommendations of the IBC. August 31, 2016 Philadelphia 7
The International Bioethics Committee (IBC) 36 independent experts that follow progress in the life sciences and its applications in order to ensure respect for human dignity and freedom, created in 1993. Main tasks: reflection exchange of ideas and information heightening awareness co-operation with the international governmental and non-governmental organizations dissemination of the principles set out in the UNESCO Declarations August 31, 2016 Philadelphia 8
Topics Reports of the IBC: The Principle of the Sharing of Benefits (2015) Updating Its Reflection on the Human Genome and Human Rights (2015) The Principle of Non-Discrimination and Non-Stigmatization (2014) Traditional Medicine Systems and their Ethical Implications (2013) The Principle of Respect for Human Vulnerability and Personal Integrity (2013) Report of the IBC on social responsibility and health (2010) Report of IBC on Human Cloning and International Governance (2009) Report of IBC on Consent (2008) Preliminary Work Programme for 2016-2017 big data in health care and health research bioethical questions arising from conditions of refugees and migrants, with a specific focus on health care August 31, 2016 Philadelphia 9
NECs in Europe Main functions are very similar all over Europe Opinions/recommendations on bioethical issues Facilitation of public debate Participation in the legislative actions However, review of human research projects is a rather common function of NECs in the New Member States of the EU (members from 2004): Most of the biomedical research - Slovenia Multicenter studies Lithuania Specific projects e.g., human genome in Latvia Appeal body Poland 2008.09.14 Astana, 2016 10
Challenges to NECs: developed countries Misinterpretation of NECs activities difficult to measure impact recommendations cannot be directly implemented cannot offer definitive solutions to problems Future challenges improving NECs ways and possibilities to reach out to the public addressing new developments regarding emerging technologies August 31, 2016 Philadelphia 11
Challenges to NECs: developing countries I The main remaining challenge is how to overcome the asymmetry between developing and developed countries in terms of: Availability of information on structure/functioning/output Limited resources Difficulties to engage in a pluralistic discourse in the authoritarian/undemocratic societies August 31, 2016 Philadelphia 12
Challenges to NECs: developing countries II Issues to be prioritized and understanding of what is an ethical issue are context specific: E.g., in many developing countries the problem of corruption rather than ethical issues of emerging technologies can be seen as a priority issue Controversies of global approaches: Developed countries are less interested in a general framework of principles, while developing countries usually lack resources/means to implement them August 31, 2016 Philadelphia 13
Concluding remarks Global capacity building initiatives should be more explicit about different challenges faced by the NECs operating in different sociocultural contexts Experience of establishing/building NECs in the EU/Council of Europe member states can be used to better understand processes in the developing countries August 31, 2016 Philadelphia 14